belgrade Posted February 8, 2014 Posted February 8, 2014 Hi Catherine,Sorry to hear about your Dad's diagnosis but I'm sure you will get plenty of advice and support from this forum.Emma,Interesting to see you are from Mid-Glamorcan, as I live near Aberdare. Perhaps we could have a coffee some time.Steve,I shan't comment on Wales's performance today!!!Regards to all,Hilary x
laura Posted February 8, 2014 Posted February 8, 2014 hi mike, just a quick note as i shouldn't be on the "patients" forum.we/bri were never given any ca-19 results though we both knew about them, { me going on 73 and bri 65 next week] but our oncologist and team still always want to know how bri is feeling and always ask if there have been any changes in what he achieves, they too assure us that how he feels and looks is such a good indicator of how he is.we are now 4 years from diagnosis [ wowee ] and seen every 6 mths, with open app if needed.so dont think its to do wth your age!!!! lolkeep on keepin on, love laura xxx
cestrian Posted February 9, 2014 Posted February 9, 2014 Thanks LauraI think I post all over the place on here so don't think you need to worry too much which forum you're on as it's surely all about mutual support. Apologies to mods if this is against the rules!It is great to hear of stories like Brian's and I will ask specialist about markers on Wednesday. Whether I'll get an answer is another matter!Love and PeaceMike xx
cbrooks Posted February 9, 2014 Posted February 9, 2014 Thanks Steve, (and Emma, cathy and mike)for the kind comments, steve hope you enjoyed yourself at the grand last night will suggest to my parents about maggies, or maybe when im down in singleton when dad goes in for biopsy I will take mum up there for a cuppa and just introduce it to her and yes It would be great to meet up for a cuppa up there aswell. will stay in touch. will keep coming on this forum as I know It will help myself. even if my parents heads are in the clouds about the whole thing. Knowledge is power!! thanks so much again everyone and good luck for tests this week Steve, positive thinking only way to go. you have inspired me! Catherine
Bee Posted February 10, 2014 Posted February 10, 2014 Hi,Steve, keeping everything crossed it's just a blip and nothing more. Good luck and keep us posted .Bee xx
EmmaR Posted February 17, 2014 Posted February 17, 2014 Hilary , I think I am a little too far from you for meeting for coffee but Cardiff maybe be a mutual meeting place if you want my email address to know my location could you contact the forum team it would be good to email each other . Hope everyone else is ok and keeping strong and fighting the fight !! EmmaR x
Slewis7313 Posted February 17, 2014 Author Posted February 17, 2014 Thanks Emma, a meet would be good. I spend a lot of time in Newport (my real home) so meeting somewhere in the middle would work for me. SteveX
EmmaR Posted February 17, 2014 Posted February 17, 2014 Steve, Thanks a meeting in Cardiff would be good will wait to hear from Hilary , if you want my email address please contact the forum and maybe we three can meet up . Emma x
Slewis7313 Posted February 18, 2014 Author Posted February 18, 2014 Jeni / Di, could you help with the email address please?Steve
belgrade Posted February 18, 2014 Posted February 18, 2014 Hi Both,Have emailed the team today to exchange email addresses. Would be lovely if we could meet up for a chat and to put faces to names.Take care,Hilary
PCUK Nurse Jeni Posted February 19, 2014 Posted February 19, 2014 No problem Steve/Emma - can sort an "e-meet" for you both!Jeni.
Slewis7313 Posted February 19, 2014 Author Posted February 19, 2014 Just a quick update to say my CT scan is Wednesday (26th) with a review the next day with my Oncologist. Still feeling fine, so hoping it will indeed turn out to be something and nothing (if such a thing exists in the world of PC!).Stevex
PCUK Nurse Jeni Posted February 19, 2014 Posted February 19, 2014 Well we should all be where you are Steve (geographically I mean! ) CT one day and a review the next day?? Impressed! Well, I am assuming the review will include the CT results, or maybe not??Whatever Steve, hope it all goes really well, and good luck Friday night against Les Blues! Jeni.
Slewis7313 Posted February 19, 2014 Author Posted February 19, 2014 Good point about the dates Jeni, but we were so concerned initially that we put pressure on them to speed things up if possible. The scan date could not be bettered, so they suggested a quick review and expect (not guaranteed) the result of the scan will be available. It may backfire, but if the results are not available, I have no doubt another consultation will be scheculed pretty quickish! The really do try to help in any way they can.Looking forward to beating France on Friday evening. We don't really mind losing to the Irish (just as well). We have a full day as we are going to an Eastenders charity lunch at the Marriott in Swansea on Friday. Janine will be there, along with 'Dirty Den' cocktails and Pat Butcher earring competition (ladies only I believe). All in aid of Maggies.SteveX
PCUK Nurse Jeni Posted February 20, 2014 Posted February 20, 2014 Oh that sounds exciting Steve! (The Eastenders evening!) Quite a few fun things there! I am sure you will have a great evening. Don't forget your earrings, just in case! Well, Steve, its not impossible to have scan results the day later. I remember a time when the hospital where I worked used to report the scans on the day, and release the report to typists, so even if it was not on the system, the result could be obtained. Sometimes too, they do a verbal initial report, which they can pass onto the consultant. It all depends. You might find that they will have "some" result for you Steve. Its not impossible - just depends on who is available at the time to carry out the scan and report it. I know many consultants do meet with the radiologists to go over scans as well, and get measurements, especially if the person is on a clinical trial of any sort. No doubt each hospital have their own routines and ways of working. Yes, do beat France please! Then, pressure on us for the England game! Oops! It will be a battle, as ever, but more at stake this time! Take care Steve.Jeni.
Slewis7313 Posted February 27, 2014 Author Posted February 27, 2014 Well the Eastenders 'do' was a most enjoyable way to spend a Friday afternoon and we sorted France as promised.....but back to me!My scan was yesterday afternoon and I had the report in my hands this morning! I am so glad to say that the jump in tumour marker was indeed a blip and my tumour remains stable with no sign of any spread. In addition, the fluid build up they saw on the last scan (from surgery) has almost completely dispersed. An excellent result, with smiles all around. I have been a little tired, but my Oncologist reminded me that I have had chemo, radiotherapy and major surgery over the last year, so tiredness is not really surprising. The advice is now that I redo the bloods again in 6 weeks and review my situation at that point. Sounds like a plan! Thanks for all your positive comments and support whilst awaiting this scan.Take care allSteveX
RLF Posted February 27, 2014 Posted February 27, 2014 Feel really chuffed for you Steve! Ca19-9 isn't an exact science it seems so i'm glad you proved that point! Rob
MSH Posted February 27, 2014 Posted February 27, 2014 Good to hear of some positive news, long may it continue.
Janiebobs Posted February 27, 2014 Posted February 27, 2014 That is great news SteveAll the best Jane
EmmaR Posted February 27, 2014 Posted February 27, 2014 Looks like the coffees are on you then Steve lol but seriously brilliant news .Emma x
J_T Posted February 27, 2014 Posted February 27, 2014 Wow! So pleased for you all Steve. Waiting for results is always stressful so glad you can now celebrate a little!Brilliant!Julia x
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